By Joyce Frieden, News Editor, MedPage Today
Protect privacy while helping consumers understand the data
AS VEGAS — Personalized health technologies — such as wearable devices — should be built based on sound science, according to guidelines for developing the technologies released here Wednesday.
Basing the technologies on sound science was one of five principles included in the guidelines, which were announced at a breakfast session at the annual meeting of the Healthcare Information and Management Systems Society. The breakfast was sponsored by The Vitality Group, a subsidiary of South African insurer Discovery, which led development of the guidelines.
The guidelines are “an exciting and important initiative,” said Kevin Patrick, MD, MS, director of the Center for Wireless and Population Health Systems at the Qualcomm Institute at the University of California San Diego. “We can have a ‘Wild Wild West’ [in this area], heavy-handed regulation from the top down, or we can do this — self-governance.”
Patrick was a co-author on an article published online last July in the Journal of Health Communication that included a set of six draft principles for use of personal health information technology. The article asked for a “global public consultation” to come up with a final set of guidelines. The current set is a result of that work.
The five principles named in the guidelines are:
- Build health technologies informed by science
- Scale affordable health technologies
- Guide interpretation of health data
- Protect and secure health data
- Govern the responsible use of health technology and data
The principles can be crystallized into a few short words: science, affordability, literacy, security, and responsibility, said Eduardo Sanchez, MD, MPH, chief medical officer for prevention at the American Heart Association, in Dallas. “The opportunities are really quite boundless but we need these kind of principles to help guide us.”
Sanchez noted that a meeting he attended the previous week, one presenter said, “Who should I trust with my health information — hospitals, after a hospital was hacked and had to pay ransom to be able to use its system, or Apple, who is being taken to court by the federal government to open one phone with a lot of information in there?”
“You decide where you think your information should go, but maybe more importantly … These principles kind of create a really nice framework for how we should use these technologies.”
The AHA has defined ideal cardiovascular health with seven metrics, known as the “Simple 7,” Sanchez said: smoking status, healthy eating, physical activity, health weight, healthy blood pressure, healthy blood glucose, and healthy blood cholesterol. “If at 50 years old, you’re good on all those things, the likelihood that you’ll go to 80 or 90 years old with either decreased burden of disease or no disease at all is very, very high.”
The AHA is using the “Simple 7” construct with large employers to test the idea that collecting data on these metrics — including data from wearables — can help employers understand the “profile of opportunity” in the workplace, Sanchez said.
“Use of this technology, on the one hand, helps us deliver messages to individuals about things they might do, and on the other hand, understand the context in a way that helps us make some of the suggestions and counsel about what can be done in the workplace … to make it easier for people to achieve any one of those ‘Simple 7’ health metrics,” he said.
Patrick said one of his concerns with the use of personalized health technology was “the notion of a major asymmetry that might emerge between what the private sector does with these data and, in the health-related sector, what we might want to do with these data … This is a huge challenge right now, and it’s going to take some very tough policy to work through. Guidelines like this engage everyone at the table.”
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